Realistic Medicine; What?Why?How?: Recent Episodes

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Kate: Welcome to episode four of our Realistic Medicine podcast. I'm Kate Arrow. I'm an Anaesthetist in NHS Highland and today we've got Doctors Suzanne Farrell, who's an Anaesthetist and Intensive Care Consultant in NHS Lanarkshire. And Suzanne is going to share a little bit about her experience with Realistic Medicine. And we're going to have a bit of a focus on some work she's been doing setting up a shared decision making clinic. So, Suzanne, do you want to tell us a little bit about yourself?

Suzie: Hi, Kate. Thanks for having me. It's an absolute pleasure. Yes. I suppose the first thing I should say is, call me Suzie. Okay. I'm an Anaesthetist in Lanarkshire and also in Intensive Care, and I've been a consultant there for just over ten years. So I guess what's brought me to Realistic Medicine has been a kind of circuitous journey. But if we start off by saying that half of my working week is in high risk anesthetics and the other half is in intensive care, that gives me a kind of dichotomy in my job because I love talking, I'm a gab, I like patients, I love hearing their stories. And as you know, you do the same job. It's really difficult when half the time you're spending your work and caring for patients that are unconscious. So I have this desire to not just deliver high quality anaesthesia, but also to really engage with patients and as much as I can, I guess I started off doing a Monday vascular list. That was difficult because it meant I had to go and see my patients on a Sunday. I thought, that's not good. Like, you know, I don't want to go on Sunday and meet my patients at the last minute. But the kind of process evolved and I started bringing patients up the week before. Then I started involving the surgeon and said to the surgeon, listen, why don't we go and see the patient together? This is high risk stuff. Then I developed an interest in assessing high risk and what high risk actually means. I got funding. I managed to put in a business case and successfully got funding for cardiopulmonary exercise testing, which is one way of stratifying risk. So it kind of grew from there. And I think what I was trying to do was do the consent process better. But despite that, I just still had this sense that it wasn't enough. Although we were telling people what the risks were, it was almost when the decision was made for them. And I kind of got this. There was a few notable cases there's, a few patients that really stick in my mind over the years, but despite the risk assessment, having said, yeah, you know what? Probably good to go ahead, did badly or didn't do as well as I hoped they would. So I had this kind of growing idea that there might be a different way to do this. So literally, about seven years in, no part of a lie, I got this, itch. I had to go somewhere. Now my best friend says I've got itchy feet and my husband says that I've always got a project on the go. So despite having four children, I decided that the next project was going to be I was going to try and find another way of thinking and another way of looking at this particular group of patients who are very, very high risk for surgery. So I came across a job in New Zealand and I applied and I spoke to them and I said, listen, I want to come and work for you, because they were looking for a locum, really. But what I wanted to do was join a clinic that they had already established there and they had this clinic model that they called 'Complex Decision Path'. So I started trying to line up all the docs and negotiate with my workplace to go away for not just the three months sabbatical that you earn after seven years as a consultant, but really to go that far, I wanted to be away for a year. So I had a lot of persuading to do. And NHS Lanarkshire supported me, ultimately, and going away turned out to be on the brink of a pandemic. So in January 2020, I dragged my husband and four children to the other side of the world just for a breath of fresh air and to try and see if there was a different way to do what I was doing. And oh, my goodness, what a great decision. So I participated in the clinic there, which was really different, really labor intensive. Instead of it just being a patient coming to see Anaesthetist face the fase, to discuss risks, they have two consultants. And I think that that's an expensive idea for the NHS. But actually I think it is so valuable, you'll know yourself, Kate, that Anaesthetists, like surgeons, have got different attitudes to risk. And I think the problem with a lot of high risk patients coming to see one anesthetist is that although one anesthetist might have a risk discussion with a patient and think, yes, okay to go ahead, we've discussed it all, we've been through the consent process. The patient comes on the day for someone different. So definitely there's two things I'm really not sure about this. So that creates a problem. Patients then can get cancelled on the day. They're deeply disappointed, the Anaesthetist on the day, feels uncomfortable, but bad for having to cancel the patient. So it has to be a better way to do this. That's why my clinic idea requires actually two consultants. There's one anesthetist and there's one intensive care specialist. So I think that turns it more into a multidisciplinary team instead of it being one Anaesthetist dependent. And it also definitely puts the patient at the heart of the multidisciplinary team. And the patient's family who come along with that is absolutely true. So I've spent the last year setting this up and it's running and now it's been funded. I can't believe it. I mean, honestly, everybody returning at the moment. We're told there's no money for anything and I've managed to present this to our board in September and meet our goal, and it's rewarding and I'm loving it.

Kate: How did you do it when you were still kind of on a shoestring, like when you weren't funded?

Suzie: Yeah, so when I came back from New Zealand,I had 4 hours a week. A job within a job was being advertised to be the realistic medicine deputy. So I applied for that and I got it. So I have used that time, if you like, to set up my clinic to do all the legwork and stuff. However, the people I really have to thank here are my two principal enablers actually set up the clinic. They've given me their time. So I've got one colleague who's about the equivalent amount of experience to me and works in intensive care as well, and one who does just anesthetics. And they have both come a lot. I've basically come back full of enthusiasm with this idea and said, listen, can you come and join me? Can you join me in this? And they've given me their time, really impressive time, whetn they're meant to be non clinical or recovering, in order to deliver this kind of labor intensive consultation. So it's been great. So. Thanks, Graham. Thanks Vanessa. Thanks so much for letting this happen, really. And we've done that for a year unfunded, so I've kind of counted it sort of in with the other stuff that I'm doing. But they have given their time for free. Very grateful.

Kate: Yeah. And so how has it gone down with the, I suppose I've got two questions; how do the patients find it? And how did you show the benefit, when you're so limited on time, in a way to get funding to prove it's worth?

Suzie: Patients love it. So really, when I presented all my data to the board, the two principal threads were when patients come to speak to us in a clinic like this and you really put them at the heart of the decision and allow them to realise that actually sometimes having a big operation isn't the right choice for them. If you allow them to realise that and they effectively opt out of having high risk surgery and choose to spend whatever time they have left. Now, this is hard. These are hard, hard conversations. Like you're asking someone who's got bowel cancer, for example, to consider the option of not having a curative resection. Now that for most people is very difficult to get their head around. And most people, if they have cancer or an aneurysm they want to deal with, actually by the time we tell them what their individualised risk is, they say 'don't fancy that', and we would support that decision. Sometimes equally we support high risk patients who do want to go ahead. So this isn't about, patients sometimes become a bit defensive thinking, oh, but last week the guy came in and said, you're just here to talk me out of this. And I said, Actually, we're not at all, we're here to try and help you and what this might mean. So it's not for me to say what's right for them. In all honesty, if I was over the age of 80 with bowel cancer, I would not be having surgery, right? But I try very hard and I teach everyone not to say, you know, the thing that we've always said to patients if you were my relative, it's a very, very it's a very engaging way to, I suppose, earn trust with a patient, right? But I've schooled myself not to say that now because it's not the right thing. That's my choice, but it might not be their choice. You have to kind of present the information neutrally and involve them and their family and making the right decision for them. So we have great chat. We have what does a good day look like for you? Tell me what you want to be doing for the next few months or years of your life. I love to get patient stories. So, for example, we had one woman with locked in syndrome. On paper, you thought there was no way she should be having surgery, but when you met her, I discovered that actually she managed to do some online gambling and go on holidays and things. So really it's not for you to judge what the patient's quality life should be. And I will support high risk and I'm comfortable with that, having done higher risk for ten years. But equally, I think there are a lot of people that end up in ITU that should have had these discussions. Sorry, I've gone off at a tangent. What was your question?

Kate: No, you had good feedback from that.

Suzie: So basically I knew that having spent the time and the pre assessment department given me the clinic space and all the rest of it, I'd have to justify it not just on the fact I know it's good. So in about me, I got one of our registrars to go. Now, all the patients we've seen, there are a number of shared decision making tools out there. There are kind of patient questionnaires and one of them is called collaborate. The other one is SURE, I like SURE a bit better because it's simple, but we had to wait to get permission to use that. So at the time we used this collaborate questionnaire, which basically asks the person questions like how much time was spent ascertaining what was important to you? Did the health care worker involve you in the decision making? You know, it's a kind of a tool to say not are you happy with your decision, but were are you supported in your decision making? And we all we scored highly. And more instructive probably was the free Text feedback. That was really rewarding was worth hearing. You know, for the first time I felt like someone was listening to me comments like that. The husband of a woman with MS said to me, this has been transformative. Honestly, he was crying in the clinic when we spoke with him and I think he realized that was because he realized how serious this was. And although Graham, my colleague was bit uncomfortable, actually, to me that's a mark of a good quality consultation.  So in a way, there's a dichotomy for me, unrealistic medicine, because I spend half my week working in intensive care. It's the most unrealistic medicine we deliver, like lots of our patients do badly. We are very familiar with that. So I struggle with being an Anaesthetist, not being able to talk and I struggle with being an Intensivist and trying to deliver realistic medicine. It's really hard actually. I think this clinic brings all of those things together for me. It lets me talk to patients, it lets me have anticipatory care discussions with patients and so it's delivering shared decision making and anticipatory care planning at the same time. And I have to thank actually also Kirsty Boyd, who's a reader in Palliative Care Medicine, who early doors gave me a big steer on how to direct, how to structure these conversations and has encouraged me also to video myself, which I'm sorry I haven't done yet, but it's on the list just to make these consultations better. But I'm heartened to know from the feedback that we've got so far that honestly, patients love it and anything else besides that's enough for me.

Kate: Yeah, I think you're right. Like Kirsty Boyd and the other person who I've heard speak around the subject is Kathryn Mannix, I don't know if you've come across her and she's a retired palliative care doctor who's written a book called With the End in Mind. And listen, I don't really yeah, I think what I found because I'm obviously, like kind of earlier in my journey of running a similar kind of clinic as part of my pre op assessment clinic. And so I'm still learning and to hear from them structures on how to have those conversations, because I think a lot of us want to have those kind of conversations. But it takes practice, it's a lot of work to do it well, to allow the time for people to speak, process information, and to do it in a way where you're not talking about risk in a way that it sounds like you're just trying to talk them out of having surgery. But like you said, what I found really helpful is talking about what their goals are, what their motivations are. And we heard in the last episode from Norma about how a good day for her is that she's able to smile at somebody and they smile back and she feels like she's given them a positive experience and they've given that to her. And for you and I, active able people. I might not have really thought about that until she told me. So we don't know what we don't ask, do we?

Suzie: Yeah, absolutely. And I think it's easy for a risk averse Anaesthetist to look at a lot of evidence in paper and some common function tests and some correspondence from specialties and think, oh, this is really high risk. But honestly, we have gone into the clinic, Graham and I have delivered the most, and in advance we've said, right, based on what we see in paper, what do you think? Would we support this patient? And we just as an exercise, we say yes or no. And honest to God, sometimes we come out of there having done a complete about turn. Yeah, because you're very compelled by what the patient says. And sometimes the patient has done a complete about turn by coming and speaking to us. It works both ways. So, genuinely, I'm not doing this to save money and to save critical care spending. I'm doing this because I want to support the patients and make the right decision.

Kate: Yeah. And how do you follow up with them? Because I find a lot of our patients come through as a kind of one stop shop, where because they travel big distances a lot as well, like from the Western Isles. And they might come and they'll see the surgeon, they'll be told their diagnosis, surgery will be discussed, then they come through, they have all these rafts of tests done, and then eventually, after a nurse has spoken to them too, they get to us and they're kind of exhausted. Usually I start out by giving them a cup of tea and a break to kind of think about everything.  But I think it's a lot of information and quite often they come across as being quite shell shocked. So how do you follow that up?

Suzie: How do we complete that? Well, we do two things. So, first of all, we say to the patient, right, you don't have to make a decision today, right? Some of them have made up their minds, but actually, many of them need to think about this more deeply. You don't need to decide today, but we're going to write you a letter of detail on what we've discussed and we'll write it in patient centered language that you can understand. I always insist that they bring a family member with them, but there can be wider family that they want to discuss with. But then they've got something in black and white in case they can't remember what we said in the day. We've written it down and we've written it in language that should be readable. There's only been a couple of times when I've brought patients back to a second appointment and that's because they haven't managed to bring family with them the first time. And I think totally it's a game changer having a family in the room every time. Absolutely. Because quite often the family gets it, but the patient doesn't. Or it's the family that insisted the patient isn't. What happens to this patient isn't just going to affect them, the pieces are going to be picked up by the family. So that's the only time that I've had patients come for a second consultation. So normally we cover it by sending a letter out, then they get some thinking time to reflect and then they go back to the surgeon that's referred them to us. So I'm asking the surgeons to engage with this process, that's a big difference. And I asked them for the BRAN, for the benefits, the risks, the alternatives and if they do nothing. And I asked the patient for the same thing in a homework letter before they come to the clinic and if the BRANs don't match, then it's your questions answered. But even last week, quite a senior surgeon said to me, what's the BRAN? So every time I get a referral for this kind of gets an opportunity to spread the message of realistic medicine more widely. So we don't just want a big wordy referral letter, we want the BRAN.  And then once we've had, once we write down the BRAN, the BRAN from the patient and they can see that, they can see what their mortality and complication likelihood is in black and white, I think it just sinks in a bit better than being in a consultation where you're throwing lots of information. I can't remember what's been said so I do teach back at the end of the clinic. So I say to the patient, what have you heard me say? Here's what I have heard you say and reflect back, what have you heard me say? Quite often they can't compute that it's just too much. Sometimes the family member can do it. I think the letter going back to them is great and it gives them time to think about it, that they come back with a decision and then at an interval to complete the loop properly, I've got an ongoing audit. So we basically phone them up and say, listen, you're going to get a phone call in a few months and we're going to ask you if you think you've made the right decision. So I've got a registrar on that. We've done that in May and we're about to do it again just now. So we do try to follow up at our six month interval. Sometimes some of those patients will have died and you get the relative, you get upset relative, so that in itself is difficult, but that's my process so far. It's evolving. It's hard to decide when the right time is to follow up, but that's basically what I'm doing at the moment, is a letter and a follow up phone call.

Kate: Yeah. And then constantly adapting and improving as you go. Yeah, that sounds amazing. And would you be happy to share some of that paperwork that you use?

Suzie: Yeah. So actually, what I've done already is I've got this funded here. Lanarkshire has got three hospitals and the other two sites that's Monklands and Wishaw are now ready to use my paperwork. And I've also set up the IT referral process to be usable in all these sites. So although they've not managed to get two consultants funded, they are using some of the kind of infrastructure that I've set up because it makes the referral process much, much quicker. You're not waiting for letters to be typed and snail mail. That's useless. So all of that I'm happy to disseminate. And it just means that when people get used to looking at that letter and we have to find the specific bits of information. So if they present to ED, for example, obstructed with a bowel cancer, I'm hoping that in time, instead of maybe taking them for emergency surgery, if they've expressed their wish to have that, then when they come through the front door.

Kate: Yeah, that sounds amazing. I think a lot of what you've talked about, we're doing, but we're doing it in isolation or maybe like, some clinicians are doing it more than others. And what happens with us is that the patients offered the surgery and then they come to see us, and then there's a bit of backtracking. So I feel like we need to be in there having the conversation earlier. Do you ever go to, for example, like, a surgical MDT, where they're making the decisions?

Suzie: They have a vascular MDT, so that is difficult, actually, because quite often the patient the decision has been made and the patient has an expectation. What I'm trying to do is rewind the surgeons and say, listen, if you see a patient in clinic and you get that sense, I don't know if they're fit for this. I don't think this is the right thing for them. But I've got 20 minutes to talk to them about everything I said. Don't tell them they're having surgery. Tell them that it warrants further discussion. Because as soon as you've created an expectation in the patient, they think that that's what they need, even though it's not. So it's about rewinding the process and vascular MDT, for example, where you decide whether patients having chemo surgery or open surgery, that's another can of worms that I've dealt with for the last ten years as well. So I've had kind of good training and trying to meet surgeons halfway, if you know what I mean.

Kate: Yeah, totally. And the surgeons that I work with are really on board with improving the process. They see that there's definitely things that we can be doing differently. It's just when we're in this time of such pressure and everyone sort of working beyond their capacity and without funding, it's great to hear a story of how you've changed things in the same setting. And without waiting for resources, waiting for funding, you're kind of doing it as you go. And I'd hope that we are in the process of doing that too. But it's really inspiring to hear that.

Suzy: Yeah, so it just got start small, keep going, and hopefully the evidence will persuade the people with the money. That good thing.

Kate: Yeah.

Suzie: Special thanks. Also, I think we're probably just about time, aren't we? Jean and Austin, two of my amazing colleagues who basically supported me in going to New Zealand for that huge amount of time. Although they've not been involved with the clinic, they gave me the opportunity to go and learn and do something different. And I'd encourage anyone thinking about a sabbatical, particularly in the current climate. It's not for the faint hearted, especially if you're taking four kids with you, but, my God.

Kate: I know. I think going and working in another health system, although the New Zealand Australia health systems are so similar to ours, there are so many areas where they do things just slightly differently. And it's not the panacea, I don't think, that everyone thinks it is, but they just use the resources differently. And it is so good to step out and get a kind of outside perspective, for sure.

Suzie: I'll just tell you one quick thing to finish. One of the patients we saw in complex decision path in New Zealand is Maori. And so, culturally, you have to introduce yourself with saying what your Wokka is. So what's your canoe? How did you come to be here? What's your mountain and what's your river? So I had to stand up and introduce myself and say, Hi, I'm Suzie. My Wokka was Air New Zealand. My mountain was Ben Lomond and my river is The Clyde. And so they can't contextualize you until you give your background. And then we had prayer and song before the clinic started and it was honestly so joyous. It was so joyous. I was like, wow, we should have more music in the NHS.

Kate: Yeah, absolutely. And more just together time. So what would your song be if you were going to do that in Lanarkshire?

Suzy: Oh, gosh, I haven't thought about that.

Kate: You need to come back to us with that. Yeah, people talk about that. We talk about what matters to you. But there's also a kind of where have you been question? Which I read a book by Oprah, actually, and she talks about that. So those two questions about your history, as well as what happens now for you and what's important, are so important. Yeah, definitely. I'll think what would my song be. That's brilliant. I love that.

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Kate: So we're on episode four now of this podcast, which is called Realistic Medicine.  What? Why? How? And we're really be lucky today to have Norma Davidson with us, who is a resident here in the Highlands and has been a patient and a member of the community and is a really prominent member of the Highland Senior Citizens Network. And so Norma is going to kindly share some of her story with us today, which will be really helpful. So, welcome, Norma. Thanks so much for joining us. Tell me a little bit about yourself.

Norma: Well, first of all, you've already introduced what my name is, so the first is I grew up in the Highlands of Scotland, all over, but I ran away from home when I was 14 and pretended I was 16 and joined the QARANC, Queen Alexandra's Royal Army Nursing Corps in England. And from there I took ill when I was in the army and they had to do the very first operation on me that I'd ever had in my life, where they found I suffered from anaphylactic reactions to many anesthetic drugs. So under British law, you couldn't be in an armed forces with that because you'd be a danger. So I threw a dart into an atlas and it landed in a country called Rhodesia. So I packed up everything and just went to Africa. When I got there, I joined their military, which was combined forces, but carried on with nursing training and we would work with casualties, evacuating people out. I learned to fly an airplane and land it in case the pilots got shot, because this was a wartorn country. And this carried on to about the late 1970s. And then in 1979, I hit a landmine where everything changed because it was then found I became an incomplete quadriplegic. After everything settled down, I can move sometimes. I've got no sensation in a lot of parts of me. Every time I take an anaphylactic reaction, it causes swelling in the body and when that swells up, it also seems to cause problems in my spine as well. And it can take me ages to start getting movement back after each episode has gone, been cleared and I'm out of ICU. Can take months. I eventually got transferred back to Britain in 1986 and that was when local NHS and things got involved, because, yes, I was an incomplete quadriplegic and it's a CTC five. But I shouldn't be defined. That doesn't define me, who I am, it's what I can achieve. But then I was taking anaphylactic reactions to everything around me. I was in one hospital for 90 times in one year with anaphylactic reactions. So it was decided they were going to try and work out what was causing this. And they realized that I had what was called hereditary idiopathic and acquired angioedema, which all turned into anaphylactic reactions. The physical side of me, the disability, I can cope with. But that's the side that takes over everything, because you go to hospital, you'll take a reaction when you go through the door. Doesn't matter what you were going in for, they deal with the reaction get you out, realize, oh, we haven't done tests, we haven't done anything. I had a fantastic doctor later on who then took over and said, we've got to work a plan because I was falling through cracks.  And we then started with a different way of keeping me all together. And that's just roughly, in a nutshell, probably 40 years all come together.

Kate: Wow. What a fascinating journey you've had. And then what do you enjoy doing in life now back in the Highlands?

Norma: Anything that, as you can see, I like activities, I like action. Doesn't matter what it is. I like to be a dare devil. I've always been a dare devil. So even now, even in my wheelchair and everything else, as people in the Highland Senior Citizens Network know, one of their staff is traumatized. When a few years ago, with NHS, we had people from NHS and the government, but I decided I wanted to go to the skate park in my wheelchair and they did a film for NHS and I did it. And I finally got to the very top of the park, which nobody's ever done in the wheelchair, but they forgot to pull the camera through back, to stop me hitting the camera through. I pushed my wheelchair around to fly off the top and crash landed on the floor. And I was just so excited going yes, yes. But everybody was running, thinking, she's broke her neck proper this time. So, yes, I still like to, even if it's the tiniest thing in the house. And I can't move that day as long as I've done something that I can do, I've done something.

Kate: Yeah. That's amazing. You're braver than me, that's for sure. You don't catch me in skate park.

Norma: I don't do that now. But that was about four years ago, was the last time we were out.

Kate:  So tell me a wee bit about what's most important to you, particularly from the delivery of your health and your care. What's important for you?

Norma: Well, the main part, I think the whole lot would come under one heading of this is my reality and keeping it real in my care. To me, it's got to feel you've got sufficient time with the carers or the doctor, whoever's dealing with you, that they see you not as the problem, but they see you as the person. And we then are able to work forward individually to try and work on what needs to be done. And that is the most important thing of all, is that we're seen because often you're not you're just you're a number.

Kate: Yeah. And you're obviously very experienced and eloquent in the way you get yourself across and confident, what advice would you give people who maybe are new coming into healthcare? I meet a lot of patients and people coming into the system, and they've maybe been previously healthy and they've had a bad diagnosis and they feel so worried about asking questions and about asking to be seen as an individual. So I'm on a bit of a crusade with my colleagues and there is a kind of global movement trying to make sure that health care people are asking, like, what's important to you? What's important for you, your goals for life and for us, you've had any kind of treatment, but how do you think we get our patients and the people using our services to feel like, empowered, to be as active as you are?

Norma: Well, to start with, what you see now is what has taken years to finally get to this. When I first became physically disabled and everything, probably for the first 20 years, I wasn't seen, I wouldn't speak out, I would be very quiet and fell through many, many cracks. And you felt you couldn't speak to the doctors, they had to make the decisions, they had to do this and you just had to go along with it. What made the big difference for me was when I finally got to talk to a doctor. Where they actually didn't have their back to you while they were talking to you. Because normally they're on a computer or they're writing in a book where they're actually facing you and make you feel. I can actually talk to this person because they're facing you. They're looking at you and you think. Oh. Maybe I can talk about this problem. Because when you go to the doctors, you go in and the doctors are often very busy because they've had another patient, so they're finishing up the notes on that, or they're busy trying to sort your notes and then they ask you with their back to you, what's the problem? And you think, Well, I've got this, but I don't know, should I talk to you about that? I should have talked about this. Like now when somebody's looking at you, you can open up and say something and then the conversation can start. Until then, you just sit there and say, oh, well, it's this, and get out as quick as you can because you're so uncomfortable. And yet you think, oh, I should have said this, I should have said that.

Kate: You almost need to go in with a script. I'm a doctor, but I've also been a patient, and I totally feel that feeling of almost like panic and pressure to get the right words out in time. And obviously, we're like, GP appointments are so short and I don't know a GP who wouldn't love to have more time to spend with patients. And I lived in Australia for a year, and when I was there, I went to a GP there and it was a very different experience because a lot of the healthcare there is private. So they had a longer appointment and I went in and I immediately was like, this is the problem, this is the problem. And they were like, oh, so you're Scottish? Like, what's brought you here and where are you working and what do you do? And I was like, oh, I'm working in this hospital, but this is what's happening, this is what I'd like. And I felt that pressure to get out quickly and it was so different and it was quite unnerving, almost, to have that different experience. But I came away from that thinking, wouldn't it be wonderful if we had more time? But with the time we have, I'm sure that there's ways we could use it better.

Norma: Because you end up panicked in the doctor's surgery that you find you've missed out half of what the original reason you went? Because the doctors are assessing us when we come in. But what people tend to forget, is that we are also assessing the doctor when we come in and if the doctor is flustered or they look like they're really busy, you try to quickly work out in your head in moments what's more important, because we're holding somebody up, somebody else may not get seen. And it's just all this pressure for everybody.

Kate: Yeah. And all this going on within your mind. Which maybe isn't visible either. You know. Because I'm sure if I went into consultation and the person I was chatting to had all these assumptions about how busy I was and stuff. If they told me. Then I would be able to say, Well, you're right. I am a bit busy today. But I'm really keen to give you as much time as possible or to say, Oh. No.  I'm sorry, I'm giving you that impression. You know. Enabling everyone to be a bit more honest and speak up. I think is so important. And that's why there's a big drive at the moment, particularly to get patients to come kind of armed with some questions when they come to see clinicians. So to come and say, okay, you advised me to have a treatment, tell me what the benefits are, tell me what the risks are, tell me what other options are open to me and what would happen if I don't do any of this. Because it can be overwhelming to think up questions in the moment, can't it?

Norma: Very scary, because often you're overthinking it, because if you just got one bit of information, you're trying to process that, but overthink your next question, you think, that's actually not what I wanted to say. It's a two way street, though. That's the part that we're leading to. I think, in the UK particularly, it's always been the professionals and the people, but the two are speaking two totally different languages, we need to somehow speak the same language.

Kate: Yeah. And being okay with being totally honest and kind of vulnerable and saying, you're giving me the impression that you're too busy to deal with me, and saying that at the time, rather than it being something that lingers and gives someone a bad experience or not the right care that they're looking for.

Norma: Yes.

Kate: So I think that would definitely be one of my big takeaways. And as doctors and nurses, we can set the scene with that at the start of an appointment and if there's anything that's coming into your mind, feel free to stop me and ask me a question or clarify because we're really bad at speaking in jargon and that makes light of it.

Norma: Yes.

Kate: Norma, you've mentioned before to me, you showed me that you've got a lot of care plans at home with you. Can you tell us a little bit more about them?

Norma: Yes. So what happened was there was a wee bit of a problem with my care because I'm not a simple care package. I'm complicated one because of the physical disability, which is bad enough, but then with the added anaphylaxis to everything anybody's ever trying to do, whether it's a new drug or whether it's just put me in a ward with other people and they've sprayed something. So it's very complicated. But what happens is you get one doctor, especially if you're in hospital, and then that doctor, you go away, you come back and you're given a different doctor. Nobody's all in the same hymn sheet. So it did causes big problems. But I ended up eventually in an intensive care unit. My own specialist in our local hospital had sent me off to another hospital, but there had been lack of communication between the two hospitals and I had just come off a ventilator, so I wasn't able to speak. I was supposed to go into a private ward. The hospital had just finished. It was a Friday, that ward wasn't ready. So the patients had gone home from daycare where they had operations and they put me in there and put the blinds around me. But then everybody from there left at 4pm, hadn't told the ward where I was. Cleaners came along and locked that door. I had a drip in and tubes. And from Friday until Sunday, nobody knew I was there. Two hospitals, one said they sent me, one said they couldn't find me and I was found eventually on the Sunday, just through lack of communication, drips had run out. I couldn't press a bell because there was none at the bay and I couldn't speak. And that's when I survived that one. They didn't do what they were going to do in that hospital because there was such a good road, they sent me back to my original hospital. And that's when my specialist said, this must never happen again. We're going to have your own care plan. That will be carried with you everywhere and everybody must be able to communicate it, no matter whether I can speak or not. So that was where it started. And then from there it really became a start of excellence. This was well ahead of what they're doing now. There was no laptops and computers then, but my doctor said they felt this was coming and I would get lost in the system again. So we started where they sent us to their own hospital science lab. And he had written to them all of what was wrong with me, my condition, and he wanted it all printed out for me to take home with my family, go through it. And then a week later we'd have a discussion what we wanted to happen to me, where I was going to go with it, what hospital could do, how my home care would work. And that made the biggest difference in my life. It wouldn't work with everybody, but with me, because I like to be involved, it was great. You get your blood results. Well, to some people blood results mean nothing. But we worked out what my normal for me was. So even if it was in the normal range, but it was away at the normal range, and mine is normally down here, something's wrong we could be triggering. And so now all the blood tests are sent in paper form to my house, and I put it into graph form so a doctor sees it and they can actually see the spikes up where it is. And there's a little bar through my normal is. And it just helps everybody sort whatever treatment they need. And it usually stops an anaphylactic reaction happening in advance by knowing who we are, simple things like that. And yet it's complicated for some, but for me it works. It keeps me out of the hospital. They had the doctors collaborating with the specialists, they have the GP and the chemist all working together for me to try and find the right stuff. That was way back, as I said, but that now has born fruit now, especially with covid and everything, because they were all able to treat me at home without trying to get me to hospital anytime something happened. And that's the way I think should go.  If patients had something with their own information on it's, a follow through, because your computers will only give you so much in it, it won't give you the whole truth.

Kate: I think a lot of chronic conditions, some of the more common chronic conditions like diabetes, people have actually made apps based on a similar thing that you're doing, which means that people have got complete ownership of their own care. Yes, but where we don't have that kind of thing is in people who've got rarer diseases living with Raise conditions, just like you are. And I feel like Norma. You could start your own tech platform.

Norma: I know they won't, but you will, because we even have our own ECG machine thing here that does this. And if there's any problem, it just gets printed off and the carers go down to the doctor with it and then they send it to the hospital and they work out a plan. My medications, when, as I was saying about the graphs, all the blood tests, each one is individual, the yellow is where I should be. And yet if they're out of that, then something's heading in a different direction for me personally works, but it's a collaboration and a communication between the patient and the doctors that they get it right in partnership. Too often it's separated, which you fall through cracks.

Kate: Yes. And that's like a lot of feedback that we get, is that different services aren't that good at talking to each other. Actually, for you, as the owner of your illness and your condition, your life, if you have control of the information, then it means you always know it's right and the people aren't getting it wrong and things aren't getting lost in translation. And we are, particularly through COVID there was a lot of movement to sort of empower people to do more of what you've done and making their own plan and particularly kind of anticipatory care planning. So thinking about things like if your condition worsened, where would you want to be and how would you want your care to be? But sometimes that was communicated badly or misunderstood and it came across as a conversation about death, which it didn't mean to be. But your example shows a really good example of how care planning helps you to live well. Would you agree with that?

Norma: Yes, because we did get an anticipated care plan. And good and bad, the very first one was terrible because it was done by a doctor that didn't even know me and didn't even know who I was, what I was. And it wasn't any of my wishes, it was just what they felt should happen to me if something should happen. And when I finally got a copy of it, I wasn't happy. But the specialist at the hospital looked at it and he wasn't happy. We said, no, no, we need to do it with you involved. So we rewrote a complete new one and it covers everything from, if I'm not well, do I get treated at home? The paramedics treat me here as best they can in communication with the hospital. Only if it gets very bad. Which hospital would I go to? Where would I go if carers were here? How much do carers get extra training so they can look after me at home? What do I want to happen? If it did come to end of life, what did I want happen? Would I be I've already got in mind and read letters that I don't believe in the Liverpool plan or as you said earlier, so they know I want treatment, but always look at my quality when I come back, but my qualities look different to what other people think my quality is. That's a big difference because to me, my qualities, if I can smile at somebody one day and they can smile back, that has been a great thing for me. It's not all about what I can get out there and do, it's what I can do here. Just for me and the person that's with us.

Kate: Yeah, absolutely. And that's where the care planning comes in, doesn't it? Because it includes what's important to you yes. And what you want to be able to do and that is completely different for different people.

Norma: Yes.

Kate: Well, that's really interesting. And then so tell me, I think we're going to get tight for time, actually. What do you want to tell me about it? Do you want to tell me about an experience of excellent care or something that could have been done better?

Norma: The excellent care was where I've just told about the doctors in the hospital that time, because it did that all set up for future.

Kate: Yes.

Norma: The terrible, the worst case that I've ever had either in a hospital setting and at home in the hospital setting, you're just a number and you get lost and forgotten. It's not the first hospital I got lost in. I got sent to the wrong hospital another time and it ended up with some poor person standing in a lift with me. Strapped to a trolley. A trolley upright. Because it only held two people and while they were pumping the bags. Because I was put into a  hospital that didn't even have a doctor at that hospital and I took an anaphylactic reaction there, they had to get me down a steep road all the way to another hospital that had the ICU in it. That's where patients kind of get forgotten here in a care at home place, which was also bad care is where you don't get a choice about care companies or anything and NHS just pass it over to something where you've not given a choice, you're not told about it. And just one that I was with, they're no longer with. It was so bad they didn't even have I don't know what they called them. Was it PVG checks where they not one carer had had one of them and when it came to my medication, they would open the bottle of liquid once they weren't trained on medicine or we are not allowed to pour it into the cup. Take one swig or two. So eventually I got hold of the care inspectorate and that all changed, myself and other patients that were in that all but taken out back to NHS that's where it all falls apart everybody else makes decisions and there's no checking you need it to be a partnership where we're all helping each other. Yeah you were asking a question earlier about top advice I would give that might help just small little changes I did write a few thoughts down which there's just three main parts and it's just listening. Communication and information that was my three top ones to see that's the most important because from that to look at us as the individuals we are. We're not our diagnosis and we're another human being here and then leave us feeling that it's okay to ask the questions because often we feel it's not okay to ask it leave us feeling we can ask the questions about our condition. Our care and what we do or don't want to happen and lastly in listening with us to give us value that yes. We may be the patient that's to be supported but we want to be in the center of all the decision making so it's partnership as well so that's really how I would say in a nutshell.

Kate: Yes that's amazing. And from the information side, what do you think? How could we better share the information with you?

Norma: With me particularly? I know a lot of people have these technology I'm not good with it unless somebody else is certain I still am a person who likes it in paper and speaking face to face so that then you can think better when you're facetoface but it's on technology you're spending all your life trying to figure out where to go or how to work it doctor surgery I think if they had more leaflets explaining what we can try and see a doctor surgeon telling people it is all keep to see these things but respecting each side I don't mean everybody demands that they want us to think it's got to be a partnership with all this together.

Kate: Yeah. That is agreed and I think that's like a great note to and also.

Norma: To show that we also need continuity because I have fallen through the cracks all the time where you get put into care you're coming out of hospital and it will be three weeks before a career will turn up because nobody told them but they did but they just got lost on the computer or they find that you're actually in the dead drawer and then they go to see oh. Is that person still alive? And they realize yeah. I'm not on the floor. I'm still alive and so the need to continue follow up yeah and I.

Kate: Think there's a lot of work being done around that at the moment about when people are discharged they should be discharged with a copy of their discharge letter in a way that they understand it, written in layman's terms because we can't be just writing doctor to doctor or doctor to nurse and missing out the person who is in the center of it. So there is a big movement towards that, but we've definitely got work to do. And even what you spoke to about you like a letter, and again, it's thinking about the individual. And there are ways that we can tick a box to say this person prefers a letter. This person is not at home very much, so they'd rather an email or a text, you know, and with all the technology out there that we've got at our fingertips, we probably don't use it as well as we could, but it's all things that we could be doing better. So is there like a final, like, have you got like a final message or motto or things that you want to just leave us with?

Norma: Mainly, like I said at the very beginning, that we shouldn't be defined by our illness, but by that we are who we are and that there is a life here and also that we've got to keep it real. We can all have pie in the sky thoughts of what we'd like, but keep it real because this is the reality of our lives.

Kate: Absolutely. Yes. Great. Thank you so much. 

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Lyndsay: Hi, everyone. I just like to welcome you to our latest Realistic Medicine podcast. My name is Lyndsay Stewart and I am the programme manager for Realistic Medicine in NHS Highland. So in this episode today, I'm joined by Amanda, who is one of our programme managers in NHS Grampian. And what we're wanting to do today is just have general discussion about what we do, what made us want to be involved with Realistic Medicine and what sort of challenges and successes that we've had. And then our must do recommendations for anybody new who's starting with Realistic Medicine or looking to implement it in services in their health boards. So, like I said, my name is Lyndsay Stewart and I'm based in NHS Highland. So my background is non clinical, so I do a lot of work still currently within endoscopy service within Raigmore for NHS Highland. And as a programme manager for Realistic Medicine, really our role has been a central point of contact, so anybody can come to us for advice or any questions that they have, try to get communication out for Realistic Medicine and to manage and co-ordinate activity.  So that's a little bit about myself and I will hand over to Amanda to introduce yourself.

Amanda: Thanks, Lyndsay. So, yeah, as Lyndsay said, I'm Amanda. Amanda Gotch. I am the realistic medicine programme manager for NHS Grampian and NHS Orkney. We actually have a collaboration with Orkney. We started that just around early this year, early 2022. And I will go into a bit more detail about that as Lyndsay and I chat. I am a midwife by clinical background. I've been a midwife for a very long time, but I really kind of came around to doing this work as a programme manager for Realistic Medicine after undertaking the Scottish Quality and Safety Fellowship. I Heard about Realistic Medicine whilst on the fellowship and thought, well, that makes sense to me as a midwife. So really, from there, when the opportunity came up to be the programme manager at the time for Grampian, I absolutely jumped on the opportunity and here I am.

Lyndsay: Absolutely, yeah, it's a bit like myself. So when I saw the post for the program manager for Realistic Medicine come up with my background, I look on a daily basis at the evergrowing waiting list within every hospital in Scotland, not just ourselves or with yourself in Grampian. And, you'll know, and the amount of times that I've seen patients who sat on a waiting list for weeks and weeks, then when we had capacity, we would call for the patient. And I can't stress the amount of times we had patients on the phone to us saying, oh, I don't know why I'm on the waiting list for that procedure. Or we'll phone them and say, yep, we're going to call you and you're going to come in for your colonoscopy. And when we say to them, you know, you'll have four litres of bowel prep what the procedure actually is straight away, they're going, oh, I can't do that, I don't want to do that. And if they used realistic medicine at either a clinic appointment or at the GP appointment and said, this is what might happen, you can have that conversation there, and then to the patient to say, you know, this is what to expect, there might be an alternative that they can do, but also, if there is no alternative, you're giving the patient the right information to prepare themselves. I know myself, I'm terrified of the dentist and I had to go for my first filling and I had a nightmare for a week until I actually asked the question and it put my mind at ease. So I think it makes sense. It absolutely makes sense.

Amanda: Yeah, absolutely. And I think that shared decision making and personalized care with the kind of two of the six principles that spoke to me most, lindsay as well, and I think, again, not just as well, yes, as a midwife, but also as a human being. And you're right. It is that we always imagine the worst case scenario. Don't we. When we've got to go through something and it might be bad. It might be bad. But being able to have the opportunity to prepare for it and at least start to maybe understand a bit more about the things that could happen and the things that definitely won't happen. It goes a long way. I think. To helping make people make decisions. And we do know there is evidence out there that when people are given all the information to help them to make a decision. They usually choose the most conservative option as well. Which I think is especially in today's healthcare kind of landscape that we're looking at. I think that's something we need to be aware of. That. You know. Like you say. Those people you phone up that say.

Lyndsay: Oh. No.

Amanda: I don't know why I'm on that waiting list. That's some work we're going to be doing in Grampion. We've just been awarded funding in Grampian and in Orkney to look at why people are unnecessarily put on waiting lists. Why are people added to these? What is that? Is that just in case? Is that just we need to feel like we're doing something. I'm just kind of plucking things out here, but we've got an external company who's going to come. They did the it's okay to ask a campaign for the National Campaign for NHS 24, so we're going to employ them to do the research in the first year around. What that's about, these unnecessary or inappropriate referrals, and to work out how we can give colleagues the skills, the confidence, the permission to be able to say no sometimes. That actually that procedure is not going to add value to you. And that speaks to all six principles, I think, of RM.

Lyndsay: You definitely think as well. When we put a survey round to health care workers in Highland and just said, what do they feel the roadblocks were? And a few people did come back with saying, well, you know, we don't want it to look like we're saying, no, you can't have a treatment, and then a bad guy, I come back. And I think that's where it's so important that as program managers, that we have almost like a book of communication. Yeah, absolutely. And that's something we're working on. Just to say no. The point of realistic medicine is not just to say no. That's it.

Amanda: No.

Lyndsay: It is to offer and have a conversation and explore all the options. Yes, it might take a little bit longer at an initial appointment, but I think in the bigger picture, when you look at a patient's pathway, it will give patients a better experience. They'll be more streamlined. There won't be, you know, being put on one waiting list, have a long, long wait to then say no and get put on another waiting list. It's not great for anybody, for the initial clinician putting it on or for the patient's experience as a whole. So I think that's one of the really important aspects of realistic medicine, to look at those.

Amanda: Absolutely. And, you know, just to go back on what you said there and about the first appointment might be longer, I've had that conversation with clinicians because that could be one of the potential barriers, perceived barriers as well, is that it will mean it will take longer. And yeah, I mean, it could, but like you just said, the experience will be different. And also there's the chance that future appointments either will be shorter or will be required because they have such a good discussion at that first appointment that a decision can be made or the option to do nothing, which is one of the brand options, is what's chosen. And it's okay. I think we need to get better. Speaking as a clinician, I've been comfortable with the option of nothing, because you're right, there is the whole thing. I need to be seen to be doing something or making this person better. But again, this might be coming from because I work in maternity services, which is different. I appreciate that, but that the option of doing nothing should be a valid option and should be spoken about the same way as any other option.

Lyndsay: Yeah, definitely. Perfect. So that kind of sums up our very general opening discussion. So I've only been in my role for about six months now. And Amanda, I know you've been doing this a little bit longer. Probably this one's better for yourself than me, but what have been your successes? What has worked really well. And what have your challenges been implementing different things in different areas. Obviously, you know yourself some things what works in one area won't quite work the same in another. But yeah. How do you find out?

Amanda: Well, I'll start with the challenges, if that's okay. One of the biggest challenges has been how do we know we're doing this? Our measures. I'm fortunate in Grampian, I think, because we work across the two boards. We have a really robust program board and I have a full time project manager that works with me as well. And we have lots of different plates spinning in the air, lots of different projects, and we're not running all of them. Don't imagine that I'm changing the world, but we absolutely offer support to anybody doing any work where Realistic Medicine is featured, which is just about everything but being able to measure, if I go back to the 2025 vision that by 2025 in Scotland, we'll all be doing this work in health and social care using the ethos of Realistic Medicine. How do we know that? How are we going to be able to say yes in Grampian and Orkney? We are doing all our work through that. We can show small pieces of evidence and as I say, individual projects. But being able to say that we're utilizing the whole ethos of Realistic Medicine has always been a bit of a challenge. And anyone listening to this who's been any meetings with me around this will probably be sick of me saying it, but I think maybe it's just the understanding of that. How are we going to be able to demonstrate to Scottish government, to the people in Grampian and orkney we are a health and social care or health and care provider that embodies the principles of Realistic Medicine and it maybe is just pulling all that together. But that has been a big challenge. The other challenge is when I go in and speak with colleagues around this, I'm not teaching them how to do this. I think there is sometimes that perceived barrier. Here she comes. She's going to tell us how to do Realistic Medicine? Absolutely not. What I hope I do is that I show people where they're already doing it and where there might be opportunities to do it or to do it more better and being able to offer support. So Lee and myself do a lot of presentations and we go along to workshops, forums, meetings, and that's what we start with. We are not here to tell you how to do this. I'd love to be able to say that to everybody. And another challenge, which we're just cracking, so it's not maybe so much of a challenge now is engaging with the public because they are 50% of this. We're not doing this to them, we're doing this with them. So we are just now we're meeting with our public involvement network. But we absolutely we need to get the information out there to the public, to the people that are going to be accessing the care with us. Because if their expectations are realistic and of Realistic Medicine, then we're going to be able to meet those so much better. So those would be some of the challenges, the successes, our communication and engagement. I'm going to end on a high no. Absolutely. Our communication and engagement. Lee and I, if we're not presenting at some point in a week, we think something's wrong. I'm presenting this afternoon to our clinical board for Grampian and then I've got another one later in the week with Orkney. So we do a lot of communication, engagement and we're going to be going on the local hospital radio. As I say, we're getting into the universities now as well, but that has been a real success and I really think this will kind of bleed into your probably the last thing we're going to talk about is what advice I would give. But networking, networking, networking, networking. Honestly, that's one thing I've learned again on the fellowship. The power of networks, the power of collaboration. We've done work in Grampian on our longest waiting list, which is community led vasectomy, so GP, minor surgery. We're continuing with that work just now, but that has been a big success in that we're finally cutting our waiting list. But it was even just engaging with our colleagues in primary care, you know, our GPs, our ANPs, I would put a massive tick next to that because I think from the collaboration point of view, it was a great piece of work. It really was, and will continue to be. Also, the endowment funding application for the work I mentioned earlier around value based health care and looking at how we can have those really meaningful conversations and make true shared decisions with people has just been great. So there's two of the big things. I could go on forever, Lyndsay, so I'll stop there.

Lyndsay: I think as well, when you start having the discussions with clinicians or any healthcare workers, when they actually start to hear about realistic medicine, I think a lot of people actually find, oh, I already do some of this. Everybody has that conversation. And I suppose about how it comes across and very aware just now that everybody within the NHS everywhere is overstretched and everybody is overworked and working so hard in their own areas. I think what we want to do within Highland is to really highlight what people are doing within their areas, because a lot of things that are done in one area can be done in others. And I think everybody does get so busy that they then start on their own projects. But if there is somewhere that's promoting what somebody else is doing within Endoscopy. We have been doing a lot of work within our accreditation. So we've been doing so much work on our waiting list. Doing validation. So we utilized our nursing staff slightly differently and we did pre assessments for our long waiting patients and we didn't remove huge numbers of patients from the waiting list. But we improved our patient care hugely by giving the patients the option of speaking to somebody and reassuring them by saying. Look. Your symptoms are the same. We're quite happy. We're not worried about you. But again, at the same time, if one of the nurses were slightly concerned, it gave them the opportunity to say, OK, we're going to go and speak to somebody about this and we'll get back to you. Luckily, we were good, there was nobody in that situation. But if there was, highlighting at an earlier point, rather than just leaving the waiting list, again, that's similar to the.

Amanda: Work in the minor surgery, the effective waiting list. We did something similar. We did it with clerical staff, though, in the community, and this is probably one of the other, I would say, successes.

Lyndsay: Absolutely.

Amanda: Realistic medicine is not for doctors.

Lyndsay: Realistic medicine, so much of it is not medicine.

Amanda: In a way, it is shared personalized care. Yeah, absolutely. And that can be done at all sorts of levels. And even that whole thing about the waiting list validation, you're managing risk, you're reducing waste and harm. Hopefully those small number of people that maybe have their condition has worsened or has deteriorated in that time, you're reducing harm to them by capturing them with that phone call. As I say, it shouldn't be perceived as just medicine. And I think, yeah, that's a brilliant example.

Lyndsay: Yeah, absolutely. And what I'm trying to do is get the communication out there. Because every time I speak to a different person. They have a different perception or they've only heard some bits about medicine. They haven't they don't fully know what it is. So they don't fully understand. So they assume that it's extra work. That we're trying to give them something else to do. Tell them how to do things. But it really isn't, and it is the common sense. So with the newsletters we're doing, we've been putting them out every few months, just highlighting information where you can go on to that you can get the tools on shared decision making, just making things available to different groups of people. And again, this is kind of one of the reason why we've been looking at doing the podcast as well, is just something you can have on in the backgrounds. If you want to listen to us chat, it's something you could still be doing something else at the same time. But, yeah, I know everybody is so busy, but I think just being informed really does help everywhere.

Amanda: Definitely.

Lyndsay: Just moving on, then, to our final. You'll have more recommendations, again, than I would, but I know there is a few openings within different health boards for program managers for realistic Medicine and I know when I first started in the post, I was very much going, oh, my word. As such, you have so many options of where to start. So what would you give the advice to somebody just starting? Where would you say is your easy wins all doesn't it? What would be your go to if you were just starting?

Amanda: So utilize the national network for a start. There's the big national network, which is the Clinical Leads and Program Managers, which is there's a team's channel for that. But then they kind of nick that idea from the program managers, I have to say, because that was started early last year with the program managers that were in post initially. And it is the program and project managers network across Scotland and an amazing bunch of people, but also just everybody is talking the same language on the same wavelength, but he's able to collaborate, share ideas, share support. And you know yourself, Lindsay, if you've got something, you just think, how am I going to do this? You send a quick message on the team's channel and someone will get back to you.

Lyndsay: Yes, someone will have either started it or has done it, and all the information is there to share, because it is a national program. It's not just one health board, which is great.

Amanda: So do not reinvent the wheel if you have an idea or speak to each other and get it. Kind of get a lay of the land across Scotland as to who's doing what, because you're right, Lindsay. There'll be somebody doing something, I think, in Grandpa and Orkney, our action plan is aligned to the board's action plan for the year. So we've got the plan for the future in Grandpa and we've got the clinical strategy in Orkney, so our work is completely aligned to that and we are front and center in both of those documents as well, which is great. But I think that the scorpion idea. So when I came into post early last year, I thought, yeah, I'll get an idea of where Realistic Medicine is done in the board. Oh, my word. I now liken that to looking at a plate of spaghetti. It is absolutely vast, complex, complicated, all those words. So I think start small, start attending meetings, find out in your board what are the kind of high hitter meetings. Again, we've got a clinical board in Grampian, the GP subcommittee, the Public Health Monthly meeting. I've been to these. It helps having an unusual surname, but I think I've kind of got my name out there. And Lee is doing the same. She's now leading on our communication and engagement plan. But I absolutely think start making like a broken record with this, but the networks start finding out who's doing this. I'm still finding people doing work in Grandpa and Orkney that I'm thinking, I had no idea how to care, making every opportunity count. These are all things that were started years ago that link in with realistic medicine. Why would we redo it? We shouldn't. We should be linking in with it, probably. And I think anyone thinking of getting involved in applying to do these jobs as a midwife, I thought, Why am I doing this and I absolutely love it. I come to work every morning and I feel so lucky that this doesn't feel like a job. You know, I get to do some really fun stuff. Yes, of course there are difficult and headbutting days where you just think, I'm never going to crack this, but then when you do, it's so much more worth it. And I think find the people in your organization who corporate comes are our best friends. They really are. We can get a message out on our daily briefing grampian, no problem. And that's through our relationship with them. So if we need to get something outraged about realistic medicine, they will be there for us. And the same with your clinical leads as well. I know you've got Kate in Highland who is awesome and she's probably listening to this now cringing, but I think having clinical leads that are really invested in realistic medicine is your other thing. Yeah, definitely. So not an exhaustive list, but anyone listening to this, feel free to get in touch with me on teams, on email at any time.

Lyndsay: So, yeah, perfect. So thank you so much for spending some time with me today. I hope that anybody who's listening has found some of the information we've talked about useful, interesting and like Amanda said, if you want to get in touch with us, we'll put our contact information and for the generic mailbox within Highland. So if there is a project that you are working on or looking to get some support with, we will put the addresses and the links for some of the resources that we have available in the comments section at the end of the page.

Amanda: Perfect.

Lyndsay: Thank you so much.

Amanda: Thank you.

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Kate: Welcome to the Realistic Medicine Podcast. We are taking full advantage of Health Literacy Month, and we are delighted to welcome Graham Kramer here to talk to us about about health literacy. So I'll start by introducing myself and Kate Arrow. I'm the clinical lead for realistic medicine in Highland. And then thanks so much for joining us. Graham, can you tell us a little bit about yourself?

Graham: Yeah. Thanks, Kate. And thanks for inviting me to take part in this. I'm a recently retired GP. I retired August last year, having spent most of my career as a GP in Montrose on the East Coast in Tayside. And I suppose I spent a lot of time in general practice with a big interest in people living with long term conditions. And for a few years in the latter half of my career, I was seconded to Scottish government as a clinical lead for self management and health literacy, kind of terms that are slightly confusing and people struggle to think what those might mean. But at the heart of it, it's really enabling and supporting people to be the sort of lead partner in their care, because we know that when people are the lead partners, when they're the active agent in their encounters with healthcare professionals, often health care outcomes are better, people make better decisions relevant to themselves when these sort of things happen. So there's a big political economy around supporting people to self manage, and a key ingredient to that is people being able to understand and engage in their own health and health care. And that's where some of health literacy comes in. And this is very important.

Kate: Grand yeah, because it's a term that we talk about a lot. And it became clear to me recently that not everyone fully understands what health literacy means and how they can improve health literacy. Can you kind of explain to us what it is from a clinician point of view and maybe from a patient's point of view?

Graham: Okay, that's interesting. I think there are sort of a few definitions of health literacy, and I just recently reading a paper, which was a whole paper discussed to sort of teasing out the various definitions of health literacy. It's really complex and I thought it would be disingenuous, but I think some of these are very good definitions. But I would argue that they suck. And I mean suck as a Mnemonic with S standing for skills, u standing for understanding, c for confidence, and K for knowledge. I think fundamentally, health literacy is about people having the skills, the understanding, the confidence and the knowledge to do what? To access and navigate the healthcare system, to be able to collaborate with their health care professionals, and I suppose, finally, to be able to self manage their own health and their health conditions in the way that they would want to necessarily force our treatment, some people. So that's sort of I think a light way of understanding that it's just remember the mnemonic suck skills, understanding, confidence and knowledge. There is a problem with these definitions because they often locate the problem with the person. So we might argue that people have insufficient skills and understanding, confidence and knowledge. And I suppose there's this great temptation to sort of really try and improve that, improve their skills and understanding and give them knowledge and things like that. And that's very important. But it's also a challenge for us to make healthcare much more easier to understand and more accessible and easier to engage with. I guess sort of in the evolution of the development of health prevention, health promotion, particularly in the old days where perhaps the biggest health problems were infectious diseases, communicable diseases, and health education was really important. So health literacy sort of was conflated a bit with health education. Now I think we're moving where people living with long term conditions. It's not really just the responsibility of public health teams. It really impacts us clinicians on how we engage with people and the onus for us to make healthcare much more understandable and engageable. The analogy, just a brief analogy that I've always used often tell this story, is 40 years ago, none of us had any computer literacy. We didn't really understand how computers work. And of course, IBM produced the first computer, which was this massive clunky thing which would have filled half your living room. And you would have had to have been an uber scientist or a geek to really want to be able to engage with one of these. And of course, what the computer industry could have done is they could have educated us all. They could have given us books and pamphlets to read about how to use these computers and how to code. They could have sent us off to evening classes. But in fact, what they did is they made computers a lot more engaging and simpler to use. And now, whether you're five or 85, using an iPad is so instinctive. I guess that analogy is how can we shift health and healthcare and the services we provide to be less like an old IBM computer and a bit more like an iPad, which people can engage with? So that's a useful analogy and hopefully that's sort of helpful overview of what health issues about.

Kate: Yeah, and when you say that, that resonates with me because the mnemonic that you talk about often as healthcare professionals, it's so easy to slip into Jargon and having the confidence and the knowledge on how to explain things in a way that people understand and within the confines of the time that we have to explain them can be incredibly challenging. I wrote all my letters to patients now, and it definitely takes practice and I'm sure I make mistakes in it.

Graham: I think that's a really good point. The thing about Jargon is these are terms that us healthcare professionals are so familiar with. We don't even know their jargon. We don't even know that the other person doesn't understand them. We do have to be very careful and it works some ways because sometimes if you try and oversimplify things for people and avoid jargon completely, some people feel at risk of being patronized. So I think perhaps the safest thing to do is it's okay to use jargon, but as long as you clarify that jargon, I'm just going to go and get my Glucometer. That's the little machine that I use to test your blood sugar and things like that. So use the words and then people pick these things up. And I guess in your case of point, if you are writing a letter, you can use the technical work but then put a bracket in as to explain that or have a little glossary at the end of something like that that explains these things.

Kate: Even translating terms between specialties can often be difficult because having an awareness that acronym in your world of anesthetics can mean something completely different in obstetrics. Yes, there can be a lot of confusion there, too.

Graham: I remember one little story, this is quite a case in point, actually, where people, when they go into hospital, acutely ill, and then they come out of hospital and they used to come and see me and I used to ask them, do you understand what happened to you in hospital? And it was surprising how many people didn't have a clue what happened, particularly of the sort of elderly. And I remember going to visit a nursing home and a little lady and the nursing home got a copy of the discharge letter and the diagnosis on it was non STEMI, which is a non St elevation myocardial infarction a heart attack. I went to see her with the carers and the nursing home and I said, how are you getting on after your heart attack? And none of them knew she had a heart attack. The patient didn't know that she'd been in with a heart attack and the carers had no idea because they know what non Stem meant. So we do have to be careful.

Kate: Yes, absolutely. So we can't assume that even our colleagues understand what we're talking about in our little bubble of our specialty. Absolutely. I mean, you've probably already alluded to it a little bit, but can you share the story of what really motivated you and to take this interest and do all this work around health literacy?

Graham: Yeah, I suppose I often tell the story and it really was sort of a light bulb bone and epiphany, really. I've obviously been seeing patients for many years and doing long term condition reviews with them and things. Anyway, one day I was out on some home visits and I came into the surgery, into my consulting room, and sitting in my chair at my desk was Ray, who was the taste side GP, It technician who went around servicing all our computers and updating them, upgrading them, and he often did that. And so he was in my chair and so I sat down in the patient chair and we kind of slipped into this role play. And I said to Ray, I said, common doc, how is it looking at the computer? And he began to tell me and all the things he'd done to it and the program files deleted and rebooted and everything. And it was absolutely I could get some of the words, but it was really gobbledy, really strange. And I found myself sitting there looking intelligent and nodding and taking it all in because I was kind of polite. I didn't want to say, I haven't got a clue what you're saying. And I suppose I was too embarrassed to sort of admit my own ignorance. And at that point I just thought, oh my God, this is exactly what it's like for my patients. And then I began to test that with them and lo and behold, conversations that I'd had over and over again with people, I'd realize that when you check their understanding, they haven't really taken in these concepts. It shouldn't really come as surprised, actually, because there has been research done, and this was in clinics quite a few years ago, in hospital clinics, that about half of what a person hears in a consultation is forgotten. So misunderstood. Half of what they've taken misunderstood, and of that half that is understood is easily forgotten. People are going away from these clinical encounters, often get very little out of it. Some getting a lot out of it, some getting very little out of it. Actually, when you think about it as a form of communication or education, as a vehicle for communication, it's quite ineffective. And when we're having 20 million consultations a year in general practice, 4 million consultations in hospital, there's a lot going through SIBs here and very inefficient. And I just thought, we've got to find ways of improving this. And so that was a kind of a motivator for me. Absolutely. And I guess the point of that is that the thing about health literacy or people's knowledge, confidence, understanding of skills is as clinicians, it's a kind of hidden disability. And people like me, with Ray, with the computer, we're actively disguising the fact that we don't understand. It's kind of shocking. One sort of take on health literacy is regarding it as a social disability. Really, that people, if they have functional literary problems or numeracy problems, that's a big issue. But if they just can't understand the information we're getting, well, they can't access health care. It's too complicated. It's a real disability for them. But with other disabilities that we can see, we actively do something about. And I always say that people with poor health literacy view health care in the same way that somebody with a physical disability in a wheelchair would see a world full of staircases. It becomes difficult for you to contemplate, difficult to engage in, and you don't you just stay at home because it's just too much for you. But because people in wheelchairs, that's a visible disability and we do something about it. We make everything disabled access much easier for people to get around, and we remove all those huge barriers because it's the right thing to do. But somehow with healthcare for USY, because it's hidden and we don't realize we inadvertently we don't mean it, but we inadvertently put all these barriers in place, often the barriers that we can't actually see. And it has a profound effect on people if they have poor health. Auto Sea there are some alarming statistics. There was 43% of working age adults in England are unable to understand the instructions on a childhood parasitamol packet or bottle because the wording and the numbers is pitched at a level that's above people literally in numerous skills for a lot of people, and that's just childoparacetama. When I think of all the other sort of complex drugs for trexat and morphine and all these things that we describe and the sad thing is that people with low health literacy have there's a good sort of rule of thumb that they really have twice the mortality and morbidity. So if you've got diabetes and very low health literacy, you're twice as likely to develop heart disease and failure and things like that. If you're over the age of 50 with anything and you've got poor husband, you're twice as likely to die over the next ten years. The economic cost of this in people sort of, I suppose, not being able to take the drugs as prescribed, increase use of health care services and e attendances and these sort of things, it's a huge cost to our economy as well. So it's a really big problem.

Kate: So how do we spot the people? How do we measure health literacy?

Graham: Yeah, and that's very difficult. And there's some argument that actually with the person that you have in front of you, do we need to know what their health literacy is? There's one argument that we should take a sort a of universal precautions approach. Just assume that they have low health literacy and don't use jargon and try and make things easier for them as much as possible. And that's quite good practice, really, because sometimes it might be quite shaming for people if we start, I guess, making assumptions about their house literacy. So that's quite a useful thing, this sort of universal precautions approach. And we shouldn't assume just because you might have people who are very high functioning university academics, you shouldn't necessarily assume that they understand what you're talking about. I remember talking to somebody about very high functioning civil servant, Cambridge graduate, and I was explaining renal patient view, which is where people can access people with chronic kidneys can access all their numbers and we have very good conversation about that. And then at the end of it she said, Graham, what does renal mean? We just mustn't assume it. Back to your question about how do we measure it with the individual patient. Maybe we should avoid measuring it. But I think what's really important is to check people's understanding and this is a really good practice. I think if you're seeing somebody. Maybe somebody has been referred up with a new diagnosis of diabetes or something. Just ask them before you even start. You know. What do you understand that diabetes is? And you'll get a clear idea from their explanation of it, where you need to start and where you need to begin and how to approach that. So I think that's a really important thing to do. The other thing to do is once you've had a consultation with somebody, I think the important thing is then is to check their understanding as well. And we often talk about this process of TeachBack where you get the person to say, because I'm not very good at explaining things to you, can you just tell me what you've understood and what we can get out of it? And that's a great way. Often it's a very good feedback about your own consultation skills and how good you are as a communicator and often people get it spot on and that's really reassuring, but also it's really helpful because it does clear up any misunderstandings and means the person is not leaving you going out with completely false ideas, which can be really dangerous, so that can be helpful. People say that takes time, but it saves time in the long run, so it's worth investing in that.

Kate: That really rings true with me. I remember I heard a talk from a lawyer about sort of legal aspects of medicine and I really didn't understand a thing. And what I did though was I then went to look up what it all meant and that's probably the danger as well. If we don't give information in a way that people understand, they go to their alternative sources which might not be true or credible, and they can go down that Google rabbit hole and then that leads to so much anxiety and more ill health around and you can see how the cycle goes.

Graham: Yeah, absolutely. I just forgot what I was going to say. I was also going to flip that round, actually. I think it's really important that we encourage or we demonstrate that not only we're very keen to know that the patients understood us and heard what we've had to say, I think it's really important for the patient that they feel that we've understood them as well. I kind of think about this reverse teach pack or summarizing. So if patients been telling you their problem, say, look, if I've understood you right, I think this is what you're saying. This and this and this and that's really important because we can label under misunderstandings about their mis assumptions. And so that's really important. And of course, I think the important thing about that is they feel that they've been heard and understood and that's really important in building trust in a relationship. And trust is fundamental, particularly well for any relationship in the therapeutic relationship. It's really important. And perhaps the cornerstone of shared decision making is building up that trust. So that's really important.

Kate: Yeah. Up here in the Highlands, we've got this sort of added issue where we have big rural sort of small rural populations, but very disparate. And when we look at the index of deprivation across Scotland, they're often some of our more deprived populations living further away from services. So we're communicating with them potentially more with near me, with phones. What are the things that we can all be doing to improve that interaction?

Graham: Okay, that's a very good question. Perhaps one of the first things to do is to obviously engage with our patients about what would make it easier for them as well. So if we can design the delivery of our services through the lens of the patient, then that would be a huge advantage. I know you've done a lot of work around that, Kate, when you're in Tayside and encourage them to tell you what would make it easier for them, or encourage them to tell you what was impenetrable and what they couldn't understand. That's the first thing. A key thing, I think is, as I said to you, the consultation we have is such a poor vehicle for exchange of information and patient education and these sort of things that we feel are important, but a way it can be vastly improved is through preparation before the consultation. So one of the stuff we do around sort of involved with around people with long term conditions is normally they're coming into a consultation and we're telling them your weight has gone up and your blood pressure is a bit high and your sugars increase. And it's very difficult for them to take in this information, particularly when we're giving numbers and expecting them to sort of come up with some ideas about what they're going to do about it. It's really impossible. But if you give that information to them before you have that consultation so I think your letters are great and in fact. Perhaps giving them some idea of what's going to be discussed. Something that they can think about giving them. If you do send the results out to them and give them some white space so they can write down the things that are important to them. Matter most to them. Sometimes you sort of prompt them as to what they might want to talk about. Especially with people like diabetes. Do they give them permission to talk about erectile dysfunction? Giving them permission to talk about their housing or their problem with their benefits because all these relationships, because all these will seriously infect their diabetes and give you some context. You might not be able to do anything about them, but it gives you a lot of context. It's really useful. So that bit of preparation and there's amazing a difference that makes. When we started doing that for patients, I used to get people coming in and you've given them their results for the first time in years and they've had time to look at that before they come in. Surprising things they say, well, what is this HBA one C then? Which is amazing because you've had that conversation with them for years and you thought they've taken it in, but they haven't. And so suddenly they highlight that and it's great if you do send them a letter that they don't understand. They can maybe share it with somebody in the family who might be able to understand it. Or at least they'll come back to you in the clinic and say, look, I didn't really understand this. Perhaps you can explain. And that's a productive way, your productive bit of time, you've really identified what the areas that they don't know, the unknown, unknowns and all that. So that's a really helpful so I think a key thing is for all of us as clinicians, if we're running clinics in general practice or whatever, is stop and think and think about how we can front end these consultations with some preparation for the person. That's a real useful tip.

Kate: Even just from the point of view of understanding how long they'll be an appointment. I think we get a lot of patients who come through a kind of one stop shop of a short notice surgical clinic and then they come for their anesthetic pre assessment and they've not come with the preparation of knowing that they'll be there for the whole morning and maybe bring a snack and a drink. Yeah, as well. These are the kind of things that we might discuss and these are the terms you'll hear. And please feel free to interrupt us at any point if you don't understand what we're talking about.

Graham: Yeah, absolutely.

Kate: I think sometimes we don't. There's lots of evidence out there that talks about how much we talk as doctors and we don't give people room to even interrupt, to ask a question. And I've been an advocate for a family member before who's received a monologue of technical information about a baby in neonatal ICU. And I found it hard to keep up. And there was absolutely nowhere that I could have politely interrupted him to say, could you explain what vent and adrenaline. I've always wanted to do this thing where I give a patient a yellow card almost to hold up if you don't understand something, just hold it up just to overcome that stream of words which can be impossible to politely interrupt.

Graham: Yeah, I think so. I suspect if I learn one thing over my career, I find it very difficult to practice it, but the time in a consultation for us trying to understand the patient and what matters most to them is probably better time spent than trying to understand me, actually.

Kate: And that's great. And so you've given us so many tips, which I'm going to go away and put into action immediately. But what would be like your one take home message? Like, if you could get us all practicing one thing, what would be the.

Graham: Difficult? I may not be able to distill that down to one, but I think yeah, but I think the first thing is to be health literacy aware. I think try as much as you can to try and understand or sense what this must be like for your patient. And we've all been there. We probably feel very comfortable in medical settings. But just put yourself, when you go to speak to your car mechanic about your car, your lawyer about something, or financial advisor, we all really struggle to understand what it's about. Be aware of the difficulties, try and spot those difficulties and remove the barriers and the obstacles and make things as enabling as possible for people. That would be the key message, perhaps organizationally as well in your team, if you can sort of have a health literacy enthusiast or lead like yourself, that's going to work hard to make with your patient group to make healthcare more accessible and engaging. So people do have the understanding and the confidence to be able to go through things. That's a big tip to awareness is really important. And I think that whole point of checking understanding, don't assume that you've understood each other. You check that, make sure the patient checks that you've understood and you get the patient to tell you what they've understood. And I think there's just two things. If you can practice those in your practice, you're well on the way.

Kate: Yeah, great. I think, as you see, it's such a huge topic and we could probably talk all day about it, but that is such a great start. And there's lots more resources on the Health Literacy Place website, aren't there, and training materials.

Graham: Yeah, absolutely. About eight years ago, when we developed our house literacy ambitions in Scotland, one of the things that we did set up was this house literacy Place, which is a resource, and I think most people should go and have a look at it and you'll find some useful things. It's also a good way to if you've got some useful health literacy interventions that you've been putting in practice, send them up to the health literacy Place, put them on the website and they'll get shared. And it's a good way of people in Dumb Priest learning what's going on in Inverness. Really useful community of practice. Yeah, absolutely.

Kate: We'll put that website in the show notes. Great. Well, that's a lovely conversation and thanks. So much.

Graham: Yeah. Thanks very much, Kate. Okay, all the best.

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Welcome to the Realistic Medicine podcast.  See the transcript below;
Kate: Hi, I'm Kate Arrow and I'm the clinical lead for realistic medicine in NHS Highland. In this podcast we'll introduce our team both locally and nationally and share our work with you. There will be something for everyone from sharing learning, to hearing about our community, our colleagues and the third sector. So what is realistic medicine? I went to speak to the Highland Senior Citizens Network last week and when I asked this question, very few people knew. So we've got a lot of work to do. But in essence it's a set of principles which aim to put the patient at the heart of their care. International evidence confirms that shared decision making and personcentered care improve experience, reduce harm, reduce waste and reduce risk. We know that patients often do not have time or do not feel supported to ask questions about their care. This means it can be difficult to empower them with the correct information for them to be able to digest and make the right choice for them as an individual. Our aim in Scotland is to support people to live the best quality life for as long as possible. This means we have to understand not only what help they seek for their health condition, but also what matters to them and their expectations and goals of treatment. When I spoke to the Highland Senior Citizens Network last week, I heard that their community often feel like a burden. They find it difficult to access services and their experiences vary depending on where they live. I'm going to share some quotes from them. Doctors see me as illness minus my life and wishes. It's difficult to have a conversation and you feel like you're passed around the houses. I don't feel confident to ask questions. Carers aren't valued as advocates, but they are closest to me and should be listened to. I don't feel seen or heard. There's an imbalance of health and social care that doesn't allow them to talk the same language. I feel that I'm not listen to or believed and I don't know how to get access. Now these are just some of the comments and there was a lot of great positive ideas for change and really great conversations. But these quotes all relate back to Realistic Medicine. If we can all practice Realistic Medicine, we can see that we can improve the experience of many of these individuals. And over the series of this podcast, we will go deeper into the evidence behind Realistic Medicine. We'll look at initiatives and innovations which are supporting its practice across Scotland and Highland, and also meet our colleagues and patients to hear their stories and to hear from people who are really embedded in Realistic Medicine in their practice. In our next episode, we will hear from a few of our Realistic Medicine program managers to hear about some of the fantastic work they're progressing, what their roles involve and what they are learning as they go. Please listen to this episode and to our show as we move forward on this journey with our podcast. And if you would like to be involved or share your experience, please email myself or the generic realistic medicine Highland email address, which is in the show notes nhsh.realisticmedicinehighland@nhs.scot . Bye for now.